6. Grow - Engaging People with Lived Experience

This toolkit was developed by the People with Lived Experience Workgroup and Community Champions from 100 Million Healthier Lives, and is brought to you in partnership with 100 Million Healthier Lives and the Institute for Healthcare Improvement.


Prepare for, nourish and celebrate growth. Make sure that community residents with lived experience have opportunities to learn and grow as individuals, and as leaders in this work. Think about who you are recruiting and where they are in terms of personal stability; anticipate changes throughout and make sure that if people need to leave the team they can without shame or embarrassment. Continually grow your engagement with and the capacity of community residents with lived experience by engaging people at all levels of the work; when one steps up, shifts to a different part of the work, or steps back, another can step in.  

Over the course of working on a team with a person with lived experience, it is helpful to expect change. Their role may change, their skills may grow and evolve, or circumstances may change. By checking in periodically, and marking the team—and individual—milestones, you can nurture that growth or adapt as needed. 


        1. Check-in to learn what’s working or what needs work and adjust the role as needed
        2. Support growth: skills, perspective, leadership
        3. Celebrate the wins and learning


        Check in

        • Ask if they have what they need to do the role, and participate in the work. As you did with orientation, use the co-designing the role handout, and check in again (use the questions at right).
        • Offer specific and constructive feedback. What are they doing well? Why is it valuable? What is one thing could they change, and how? Why might this be helpful?


        • Grow skills with the methodology, feedback, and more: Many organizations will waive or reduce fees to allow people with lived experience to attend conferences and workshops and some have scholarships to offer. 
        • Grow perspective: Give the bigger picture of your community's work—help them see all that is being done in your community beyond what they're involved in. Be willing to talk about things like the root causes of health inequities and other systemic and institutional barriers. 
        • Grow leadership: Ask team members with lived experience what their version of leadership looks like and what skills they would like to develop. If this question is too hard, ask them where they want to be in a year, 5 years, etc. or what some goals are and help them think through what skills might be needed to get there. For example, invite team members with lived experience to help recruit and mentor other persons with lived experience. Invite them to co-lead and present the team’s work.


        • Celebrate small wins as they happen, offering appreciation to individuals and the group. Use this as an opportunity to reflect on what made this success possible. Do the same with setbacks - celebrate the setback as a chance to learn and grow as a group.
        • Choose milestones (2x year, quarterly, project ends) and bring together stakeholders, team members, leaders and the community to share your work. Highlight the diverse leadership that you are growing: community residents with lived experience, youth, seniors, recognized and emerging leaders. Invite community residents with lived experience to co-design and co-lead the celebration, and how you share the work being done. For example: Invite anyone to present a poster. Highlight bright spots. Share the learning - including failing forward stories, or what didn’t work.


        Collage of portraits from 100 Million Healthier Lives movement
        Stories from 100 Million Healthier Lives
        Brought to you by 100MHL
        Published on 09/10/2020

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